March 30, 2004

Effexor and Withdrawal

This is a post that is going to be very difficult to write - painful even. It's intensely personal. But it involves something that is currently afflicting a great number of people, and threatens to affect many more if something isn't done. I have to make a hard choice and that choice is to honestly tell my story so that maybe others will speak up as well.

I have been on an anti-depression/anti-anxiety medication called Effexor since April of 2000. I was prescribed it to get my migraines (which were severe at the time) under control, and my doctors have continued to keep me on it to keep those same migraines under control. When I went into alcohol counseling last year, the psychiatrist in charge greatly increased my dosage from 125mg a day to 225mg a day. I really haven't been "myself" since. As the months have passed, I have gotten more and more anxious and nervous, and unable to concentrate. In the past four months, it has gotten so bad that I apparently can't even keep a job. That's right - I am once again unemployed. The job I had that I liked so much, took a turn for the worst when I was given full responsibility and my mind couldn't handle all that it was asked to do. That was actually the last straw.

I have been hesitant to blame all this on Effexor even though I knew the drug's notoriety. It had not been harmful to me at lower doses. But after doing some serious research and looking at the testimony of others, I am starting to be certain Effexor has played a major role in the decline of my quality of life, as well as my ability to work, over the past year or so.

I made an attempt yesterday to engage my prescribing psychiatrist in a discussion about this drug, but being the professional, he kept away from discussing specifics. However, I feel I got my message across. I described in great detail all that has been happening to me, and finally adding that my husband feels I am over-medicated. The doctor first told me that what I was telling him could justify an increase in the dosage of Effexor. My reaction was to just laugh, and then, for whatever reason, he annouced he would take me off the drug for good.

I'm both thrilled and terrified.

Why am I terrified? Because in addition to having all sorts of possible weird side effects, Effexor is notoriously difficult to discontinue for some - many - MOST? - people. Some case studies describing the experiences of many patients can be read here. More personal descriptions of but one notable withdrawal symptom (slangily termed "brain shivers") can be read here.

I have personal experience with these symptoms and more. In the early days of my treatment with this drug, I was sloppy about getting prescriptions refilled and about taking the pills on time every day. Two or three times of missing doses taught me a harsh lesson that Effexor is NOT a drug to be trifled with. The worst thing is that my emotions go absolutely haywire. I am not in control of anything that I feel or how I react. Physiologically, my body gets flu-like symptoms (aches, tingling, etc.) and neurologically, it's like an acid trip gone terribly wrong: hallucinations both aural and visual, weird colors and distortions coming and going and the disquieting sensation of voices whispering nonsensically in my ears. On top of all this is the phenomenon called "Brain Shivers" which is detailed in the last link in the paragraph above. All in all, it's an unbelievably nasty experience, and I apparently am one of the "lucky" ones who gets more than a few of the symptoms at once.

The worst experience wasn't really my fault. It happened two nights after my gastric bypass surgery. The nurses at the hospital did not give me my dose, even though both I and my mother asked them. They were busily running around, and apparently not having had much experience with this drug, didn't give our requests much thought. It eventually hit me like a ton of bricks, and it was a terrible experience which I don't wish to recount here in detail. It set my recovery back at least two days.

That leads into the main point of my posting this: the appalling lack of education among healthcare professionals about how dangerous Effexor is. And this is the fault of its manufacturer, Wyeth Ayerst. Wyeth has been ridiculously hesitant to admit to the many downsides of their panacea goldmine and has been pushing its use for a variety of uses that I and many others consider to be frivolous. The FDA has been on Wyeth for some time, but many feel that the FDA hasn't been tough enough. It looks as though a groundswell is developing as more and more people become aware of the situation with the abuse of Effexor and other anti-depressants by uninformed doctors.

But groundswell or no, I have a tough road ahead of me. I know all too well how my body and mind reacts to reduced dosages of Effexor, and so I know in advance my withdrawal is going to be difficult. I do consider myself lucky in that my psychiatrist does seem relatively clueful; he's prescribed a careful "tapering off" regimen which includes administration of another drug to theoretically offset the effects of withdrawal. Many of the first-hand accounts you'll read in the links I've provided are horror stories of doctors having their patients go "cold turkey" with no warning of what to expect and no support once withdrawal took hold.

I think I've said enough here. Again, I feel it is extremely important that awareness of Effexor's dangers be given serious consideration by the public. I can only hope "Dateline" or "60 Minutes" or better yet, PBS' "Frontline" will eventually get ahold of this story. Wyeth needs to be held accountable.

One more thing: I'm not anti-drug company. I realize the drug companies do a lot of good work. Nor am I anti-capitalist (just the opposite!) But in a free market of ideas everyone must be held accountable for their actions. It's great to make money; but making money off of deliberate misrepresentation of a product needs to be punished. And after reading extensively about all this, I am reasonably certain Wyeth has deliberately misrepresented Effexor, thinking that the instance of side effects would be low enough for them to get away with it.

Comments

Oh my God! I am so glad you had the guts to post this. Do you know that my doctor JUST YESTERDAY suggested Effexor as an alternative to Zoloft for after I deliver this baby? I'm not on meds now and haven't been in two years. However, I already knew I would go on them after delivery because I had such SEVERE postpartum depression the first time and need to prevent that from happening again. Thanks to your post, I will definitely do some reading on Effexor before I make a decision!
Hugs to you dear. Even going off Zoloft was really hard so I can only imagine a fraction of what you're experiencing. Make sure they don't cut your dose by more than 10% at a time. Most docs will just casually HALF the dose (how can they call that "tapering off"??) and then wonder why so many people crash and have to go back on the full dose.

Before I created Depression Blog I was given an article by a drug counciler stuck on Paxil. Its not that these drugs are bad, it is just that sometimes they are prescribed to people who do not need them. Too much serotonin is just as bad or worse than not enough serotonin.

I have just completed a hellish 12 months 'weaning' off this crap drug. For the most part I have done this alone and with very little support nor success despite being a well informed psychiatric nurse.So don't expect too much help from the ' mental health ' field. I dont want to sound like a defeatist cynic but I tried everything, including suicide,to rid myself of this evil drug and its stupifying effects. Despite the commonality of many side effects and the success reported of many varied strategies, it appears that a range of stuff needs to be tried and if it works its valid no matter what the so called experts say. Inthe end what 'worked' for me was the advent of a caring naturopath with an inquisitive mind, a range of potions and the Tryptophan precursor,5HTP, contained in a preparation called Proxan along with a few other additives. On a personal front I also had to take a no. of months off work and reveal my woes to a few friends, only 2 of whom proved capable of accepting the desperate nature of my plight. Somehow I am thru the 'other end' despite not yet regaining my old self nor the cessation of the odd side effect.Pardon the fucking French but it was absolute fucking hell not the least because I tried to do it alone for the most part and because for the most part I had no idea what the fucking hell Iwas doing or how the hell I was going to do it. To anyone who reads this and needs help or inspiration, I am it [grandiose wanker aside] I am happy to help anyone in anyway I can. Should you recqire contact details or any particular queries please e-mail me.

I have just completed a hellish 12 months 'weaning' off this crap drug. For the most part I have done this alone and with very little support nor success despite being a well informed psychiatric nurse.So don't expect too much help from the ' mental health ' field. I dont want to sound like a defeatist cynic but I tried everything, including suicide,to rid myself of this evil drug and its stupifying effects. Despite the commonality of many side effects and the success reported of many varied strategies, it appears that a range of stuff needs to be tried and if it works its valid no matter what the so called experts say. Inthe end what 'worked' for me was the advent of a caring naturopath with an inquisitive mind, a range of potions and the Tryptophan precursor,5HTP, contained in a preparation called Proxan along with a few other additives. On a personal front I also had to take a no. of months off work and reveal my woes to a few friends, only 2 of whom proved capable of accepting the desperate nature of my plight. Somehow I am thru the 'other end' despite not yet regaining my old self nor the cessation of the odd side effect.Pardon the fucking French but it was absolute fucking hell not the least because I tried to do it alone for the most part and because for the most part I had no idea what the fucking hell Iwas doing or how the hell I was going to do it. To anyone who reads this and needs help or inspiration, I am it [grandiose wanker aside] I am happy to help anyone in anyway I can. Should you recqire contact details or any particular queries please e-mail me.

I too have been having a dreadful time with effexor. I was put on effexor and zyprexa for management of severe postpartum depression. So now, three years later, after pushing for an answer to the question: "how long does postpartum depression last?", I have finally received an official diagnosis of bipolar affective disorder - what my husband and I had diagnosed me with early on. So now that my life and finances have reached the point of disaster, in a large part due to the effects of effexor and the mismanagement of my care and diagnois, I have sought a non-medicinal approach to treatment. Two months ago I started taking E.M.Power+, a nutritional supplement from True Hope International. Since I started taking it I have been on an extreemly slow wean off of effexor. I have had dreadful and painful side effects. There were a couple of days that I was so ill I actually thought I was going to die. I had terrible muscle spasms in my lower back and hips, so intense that you could see my inner thighs twitch. Add to that nausea, vomiting, insomnia, headache, electric shocks in the hands, feet, and zapping in my head, lethargy, clumsiness, memory loss, inability to form a coherent sentence, dizziness, agitation, irritability, I'm sure there was more. Clearly I have been unable to work. I had to withdraw from my graduate studies - all this which just adds to the financial stress and crisis. It has been sheer hell. I highly recommend that anyone experiencing any type of mental health problem take a look at the True Hope website. It is infomative and informational and has research to back up this supplement. I wish I would have known about this sooner.

I took Effexor for about 5 years and when I stopped, so did my life. It turns out I should not have been on Effexor at all but was misdiagnosed. Now after 13 weeks of hell and almost a year later,( I'm still not totally myself yet)I'm just plain mad at those who make the drug and fail to inform anyone it is addidtive. So I'm starting a cause. I WILL beat these people. I will even do all the work if I have to but I need people who have been through it. I need faces to go along with the horror stories from Effexor. My site is NOT selling anything and I don't want your money. Your e-mail address stops HERE.I want the people at Wyeth to be held responsible for what they've done here and if a class action gets started against them, You will ALL be on the list.
Thank you and please take care of yuorselves.

I took Effexor for about 5 years and when I stopped, so did my life. It turns out I should not have been on Effexor at all but was misdiagnosed. Now after 13 weeks of hell and almost a year later,( I'm still not totally myself yet)I'm just plain mad at those who make the drug and fail to inform anyone it is addidtive. So I'm starting a cause.( dougtyler.com Effexor link at bottom) I WILL beat these people. I will even do all the work if I have to but I need people who have been through it. I need faces to go along with the horror stories from Effexor. My site is NOT selling anything and I don't want your money. Your e-mail address stops HERE.I want the people at Wyeth to be held responsible for what they've done here and if a class action gets started against them, You will ALL be on the list.
Thank you and please take care of yuorselves.

I have given myself one whole year to wean off. I am now at 130 mg from 150. (two months to go down that much) I am now feeling the "personality change" and I am miserable. I am wondering if I want to go on. Any of you been off for a while and if so, did life get better or was it truly better with the drug?

I was about to post to my blog about my experiences tapering off Effexor when I did a google search on it and found your post. Fortunately I wasn't on Effexor for as long as many have been, so I haven't had such a harsh reaction, but it hasn't been easy. Thanks so much for sharing your story.

I have been taking Effexor XR for about 4 years. I am going into day 4 of withdrawal and am going insane from the non-stop beeping in my head. My biggest concern is that the beeping will never go away and I will have to go back on Effexor just to function. I have forced myself to go to work this week simply because I don't know if the withdrawal symptoms will get worse and I need to save the sick days.

I am so angry at the FDA, pharmaceutical companies and the health care industry in general for not advising patients of the possible damaging effects of this drug. In fact, my big mistake happened 11 years ago when I mentioned to my doctor that I had a bit of post-partnum depression. He put me on the new wonder-drug Paxil. I took it for a week and decided I wasn't really that depressed to be on meds. Well - one week after I stopped taking Paxil I had unbelievable numbness and tingling in my legs and hands, I was dizzy. I went through all sorts of medical procedures and my diagnosis was maybe a virus, maybe M.S. But lets try another AD and see if that helps. 11 years and 5 different ADs later I am going through hell trying to withdraw. And to think I didn't really need to be on the stuff in the first place.

My doctor prescribed a low dose of this drug yesterday under the belief that it would help both my depression and the painful symptoms of fibromyalgia. I don't trust him, and after reading this blog my suspicions were confirmed. I told him that i didn't want to start a medication because I really don't want to be on medication for the rest of my life, and it sounds like I'd have too much trouble trying to get off of this drug in the future. My question to those that have dealt with depression and trying to medicate it is this: have you found a good drug that works and won't cause problems like Effexor? I'd really like to hear anyone's experiences in dealing with depression so feel free to e-mail me. Thank you for being honest enough to write the truth about your experiences on this site.

Crawgirl, Did you withdraw cold turkey? I hope not! Weaning off very slowly is key, though still not easy. Dr.s latley have been recommending taking six months to slowly wean off. Most people don't want to wait that long and so Dr and patient speed it up.
I am wondering if it is worth if for me to come off at all. Feels awful! Well, best of luck to you and try to do it slowly!

HI everyone I also was perscribed EFFEXOR for depression,though I was not on the drug for that long, and really I did not feel any better being on this drug. I had night sweats every night and was quite sick of this. So I decided to go cold turkey. Well it has been about 5 days and I feel horrible. These brain and body quivers are awful. This drug conpamy WYETH AYERST should be held accountable for all of people that it has effected. Good luck to all and be stronger that this terrible drug.

I have been on Effexor for more than five years after leaving my job and having no insurance i decided to go off cold turkey. Has anyone done this and made it thru i can't seem to stop this stupid crying and i don't want to go back to the doctor i'm 52 years old and have been on antidepressants for more then half my life. Please if anyone out there has any advise i would love to hear from you. thank you

I am 24 years old and have just graduated from college finally after 6 years. I can't help but think that effexor had something to do with me being in school so long and not being able to get it together. I am so mad that I started taking this but am terrified to quit. I will be starting a new job in a new town soon and these stories of withdrawals are making me want to stay at home with my family. Should I quit taking this drug as soon as possible before I have to move away? I need my family with me for support.

I've been on Effexor for about six months, prescribed to combat "hot flashes" resulting from hormone therapy to battle prostate cancer. Well, hormone therapy is over, radiation is over, and cancer is considered "cured." The HARD part has been getting off Effexor. Yes, I've reduced the dose like a good boy over the past two months (original therapeutic dose for me was a very low 150 mg). Six days ago , I took my last 37.5 mg Effexor dose. Two days ago the withdrawal began: bizarre neurological zaps and buzzes, dizziness, mood plunges, gastro-intestinal distress and -- my personal "favorite" -- auditory and visual hallucinations! Too much. This drug's withdrawal phenomena really needs to be examined. Personally, I wouldn't touch Effexor again for anything in the world. Now, if I can just get through withdrawal. . . .

I am just weaning off effexor now. Been on for a a year. It REALLY helped me, but now as I'm coming off, I feel great. Going slowly is the trick, but even so, I still get those weird elastic bands moving around in my head. Only a few more weeks to be down from 150 mg to nothing and can't wait. I never had bad side effects from this drug--either getting on it or in coming off of it. Just glad that it was there when I needed it.

I am just weaning off effexor now. Been on for a a year. It REALLY helped me, but now as I'm coming off, I feel great. Going slowly is the trick, but even so, I still get those weird elastic bands moving around in my head. Only a few more weeks to be down from 150 mg to nothing and can't wait. I never had bad side effects from this drug--either getting on it or in coming off of it. Just glad that it was there when I needed it.

I am just weaning off effexor now. Been on for a a year. It REALLY helped me, but now as I'm coming off, I feel great. Going slowly is the trick, but even so, I still get those weird elastic bands moving around in my head. Only a few more weeks to be down from 150 mg to nothing and can't wait. I never had bad side effects from this drug--either getting on it or in coming off of it. Just glad that it was there when I needed it.

I have been on 150mg since I was 16; I am now 21. I'm going crazy. I have every horriable side effect you can imagine. I truley don't know what to do. I can't live a slave to a "legal" drug. I've tried very hard to stop, but the withdrawls are just to much to handle. Why was I never warned? Why was I put on this at 16? Is there any hope?